Post Surgery Questions

Hello,

My mother was diagnosed with Esophageal Cancer in August of last year. Luckily, the doctors found it really early and treatement started right away. Her doctor did serveral abrasions to try and kill the cancer and Barrett's. Last Monday, we were told the treametments were not working and her entire esophagus will have to be removed and pull her stomach up to make a new tube.

I have seached these forms and the Internet and I cannot get a clear idea of what it's going to be like after her surgery. I understand she will be in the hospital for about 10 to 14 days. But when she gets home, this is where things are fuzzy.

I was thinking I may have to take time away from work to help her for the first few weeks or so. I live with her and there is no other family around. I work 9 hours a day (5 in the morning to 2 in the afternoon) and I don't know if I can just leave her. However, her doctors head nurse says she will not need any help to care for her. 

Maybe this is because I'm so stressed out about this and I know how horrible this surgery will be but this seems wrong to me. She will not need any help or someone around to help her when she comes home from the hospital? Is there anyone who can tell me what to expect? I know she won't be doing cartwheels but should I really leave her completely alone right after coming home from the hospital?

You do not know that she will only be in 14 days so will have to make plans in case she is in longer - I was in for a lot longer.  My husband took some unpaid leave to care for me after the surgery.

Best wishes to you and your mother.

Could you give a little more information? How old is your mother?  Is she frail or strong?  Does she have a feeding tube?  Will they do the non-invasive surgery or the older style of making 2 or 3 large incisions.  I was pretty weak and it was nice to have my hubby home especially the first week.  We are retired so he stayed with me.  Others have had different experiences and were able to get going quite fast.  It all depends on the situation.

My mother is young, 53. She is strong, has a very physical job. They are going to do the old stype, three cutes -- One in her side, one in her throat and one in her stomach. She will be having a feeding tube when she comes home.

We spoke to another doctor today who specializes in this field and he advised me that I will need to stay with her a couple of weeks after the surgery. 

My husband had the same surgery almost 3 years ago. We didn't think the hospital stay or time to recovery would take as long as it did, I have always wished I found this sight long before his surgery! He was in ICU for almost 3 weeks and another 10 days in a step down unit. Recovery was slow and there was no way he could be left alone for at least 3 weeks. He was more on the extreme side for recovery but you need to have a plan in place in case you need it. It's good she will come home with a feeding tube, Jim wasn't thrilled about it but it was a blessing as starting the eating process again is dicey - the tube allowed for a less stress environment. Everyone responds differently and many on this sight recovered a lot quicker - I hope your Mom will fall into that category! Will keep you and your Mom in our thoughts and prayers.

Thank you all for your help and for your stories. I find a lot of information with this site and I'm very happy to have found it. I really hope she will not have to be in the hospital for longer then the two weeks they advised but I know it's possible... I am going to make sure I have arrangements in case I have to be away longer then a couple of weeks... 

It also doesn't make it easy that she'll be in a hospital 60 miles from home. But I know we're blessed they found it early and she's not frail or weak going in.

I had the 3 stage surgery also and was in ICU for about 3 weeks and then another few weeks in hospital though I did not go home with a tube.  I was 32 when I had the surgery.  After it I found that I was tired and in a lot of pain so I did take the painkillers.  My husband got me on a holiday 3 months after the surgery.

Best wishes

On Jun 11, 2012 11:05 PM KNJScorpio wrote:

My mother is young, 53. She is strong, has a very physical job. They are going to do the old stype, three cutes -- One in her side, one in her throat and one in her stomach. She will be having a feeding tube when she comes home.

We spoke to another doctor today who specializes in this field and he advised me that I will need to stay with her a couple of weeks after the surgery. 

Thanks for the info, it is very helpful. I was also very active, 58 years old and diagnosed Stage 2A T-3.  It had not penetrated outside of my esophagus.  I also had the 3 incisions.  My doctor told me that is the McKewon surgery rather than Ivor-Lewis.  I am glad the doctor told you to plan on the couple of weeks home with your mother.  She will be very weak at first.  I stayed on my feeding tube for 6 months after my surgery.  The first couple of weeks my hubby had to watch my medications because I was on so much morphine and fentinyl patch, etc. that I was not really coherent enough to administer them to myself.  I did not know I was in lala land, but hubby did and we laughed a lot about it.  After the first couple of weeks at home, she should be able to handle calling you on the phone if she needs emergency help or perhaps a neighbor could pop in occasionally during the time you are at work.  I wanted to sleep a lot for the first few weeks.  TV was a great help.  I slept in the recliner in the living room until the feeding tube was removed and received my nurishment at night.  Encourage yourself also that she will improve steadily.  It will be pretty scarey at first because of all the tubes and wires, etc. etc. BUT all this stuff goes away with the healing.  With the 3 incisions, plan on a slower recovery.    

The first month at home is kind of the pits with the pain killers, getting used to the new digestive system, etc. etc.  Perhaps you can line up a neighbor or someone to come in and check on her once an awhile while you are at work.  After the first month things look up greatly.  By the end of the summer she should be doing  well.  Use your head and not your emotions....you will get through this just fine and so won't your mom.  My incision got infected so I had a visiting nurse come in every day for about 3 weeks to change the dressing.

Ask your doctor about her returning to work.  If you live in the USA and the doctor feels she will not be able to return to work within the first 6 months, have her sign up for SS Disability.  That will carry her through until she can get her feet under her.   It takes 5 months for SS Disability to kick in, but if she doesn't get her strength back for the first year, it will be there for her.  I was terrified of the unknown, but I can assure you.......somehow things all work out.

With that 3rd incision in the neck, she may need some Throat therapy or surgery afterward.  My voice was real high pitched and squeeky.  They called in an ENT specialist and a couple of years later, I decided to have a repair done on my throat.  I hope she won't need it, but if she does.....it is no BIG thing.  It is a very small operation...painless, outpatient.  So tell her not to worry if her voice does not come back right away.  Well, I have taken up enough time and space.  Keep in touch and let us know how things turn out.  Best wishes and prayers.

Thank you so much for your story. I feel I will be much better prepared for what's coming ahead with everyone sharing their experiences. It's really helpful to know that things do get better. I will be with her as long as I can and I know our neighbors and friends can come by and check on her while I'm at work once I do get back.

I will let her know about the SS as well. Thank you for that tip. This board has really helped the stress level go down a little. It's still going to be stressful, but it's nice to know what to some-what expect. 

I had surgery November 2,2011 to remove my epiglottis, surgery was preformed by my surgeon using the de vinci robot, while not as extensive as your mom's it was a big surgery. I was in the hospital 2 weeks and came home with a feeding tube, my husband ( my rock) stayed home the first week with me and was very nervous about leaving me the second week especially since we live in the country, no close neighbors. My Son and Daughter-in-law came everyday  the second,  third and forth week..by this time I was feeling a lot better and could feed myself. I slept in the recliner in the living room, in fact, I just returned to our bed this week end and that's with a big wedge pillow. Two months after surgery, feeding tube out, swallowing therapy and speech therapy on-going, I re-started babysitting my 3 year old grandson, I have babysat him since he was 4 months old.Three months out, I started driving again, our first trip to preschool and a picnic in the park after I picked him up was glorious!!!

It's been 71/2 months now, I'm on a soft food diet and can drink about anything I want...still some numbness around my ears and neck is tight...i do my exercises for swallowing and loosening my neck everyday...

Bless you for being there for your Mom, she will be fine, just takes a while..attitude is alot too, I was determined to kick this cancer to the curb..too many things I still want to do, my bucket list is not complete.

This is a fantastic forum with wonderful people, I didn't know about ir until after my surgery, but I read everyday now, if I can help brighten someone's day, I want to..take care